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Don’t Let This Happen to You

Tim Joyce

I am writing to tell of a recent loss. More than that, though, the story of this tragic event should serve as a warning to us all.

We of the Chicago Pumpers support group lost a longtime member and friend. Bob Kwiatkowski was a terrific guy. Those of you outside of the Chicago area wouldn’t know him. He never attended the Oley Conferences. We, however, will feel the loss for a long time.

Outwardly, Bob had wispy, blond hair topping a prednisone-chubby head and huge, red blotches covering his hands and arms. Inwardly, he suffered from a congenital immunodeficiency that affected his gut. More than that I can’t really say, as he rarely talked about his problems.

Over the last few years, Bob had struggled with a virus in his intestines. He would go to the hospital where they’d pump him full of antibiotics until he felt well enough to go home. Then he’d last at home as long as he could before returning for another round. It was a vicious cycle and we rarely saw Bob because of it. For us, the worst of it, was that Bob was famous for being out of touch. He rarely returned phone calls and, to our knowledge, never initiated them. We never knew how bad things were for him.

The tragedy of Bob’s death is that it was probably preventable. The events surrounding his death could have been so different.

The Last Two Days

Wednesday morning Bob’s home care company was attempting to make his delivery. The driver rang the his apartment buzzer and got no answer. This, I’m told, was quite unusual. The driver called the office and someone there phoned the apartment. Still no answer.

The delivery man left to return the next day. He still got no answer. The company attempted to find someone who could tell them what was going on. Unfortunately, Bob’s mother was away in Arizona. Eventually they contacted her. She, in turn, called a cousin who lives in the area. The police were notified and they had to bust into the apartment. There they found Bob had passed away.

It was determined that he died sometime during the previous night. There is no telling, I suppose, what might have happened had the home care company made a bigger fuss the day before and gotten into the apartment then. And there is no telling just what Bob might have been going through during the last day(s) of his life that prevented him from reaching the door or the phone. I’ll leave that for others to contemplate. But Bob’s death can serve as a wake-up call to the rest of us.

I present to you a series of steps that you can take to prevent this sort of tragedy from befalling you or someone you know.

1) Set up a system whereby somebody calls you on a daily basis. Better yet, have them call once in the morning and once in the evening. Alternatively, you can make the call to a friend or family member. Even if you are calling an answering machine, they only have to hear your voice, not hold a conversation. This person should be trusted with a key or be able to contact someone who has one.

My mother tells me of a neighbor of hers in her youth. Every night this neighbor would place a pennant in her back window and remove it every morning. In this way, the folks in the house behind her could simply look for the flag in that window. No more than 12 hours need go by before someone would know if there was a problem. Similarly, you might signal to your neighbor all is well by opening and closing your curtains/blinds each day.

2) Be sure to act when a situation changes; make new arrangements as soon as needed. I’m told Bob had made such an arrangement with one of his neighbors. Unfortunately, she had moved away some months before and Bob had yet to find another neighbor to take her place.

3) Leave standing instructions with your home care company about how to react should you not answer when expected. This goes for any other people or companies that make regular stops at your home. This is an unlikely scenario, to be sure, but obviously possible. I might suggest that they continue to try your phone, on the hour, for say, four to six hours. If they don’t get an answer, then a neighbor, friend, family member or the police should be notified. Make sure they have those numbers available. And always notify your company if you do not expect to be home for a delivery.

4) The US Postal Service has a program called Carrier Alert. A notice is placed in the mail box to alert the letter carrier. After three days, if the mail has not been picked up, the carrier notifies the Post Office and calls are made. You may have noticed that letter carriers now have cell phones with them to keep in touch with the home office.

5) Remember the lady on television shouting, “I’ve fallen and I can’t get up!” Look into one of those personal medical alarm ‘panic button’ systems that will automatically place a phone call to an emergency number such as 911 or your doctor. Your hospital may offer such as service or know who does in your community.

6) Consider becoming a member of MedicAlert®, a non-profit membership organization (800-432-5378 or www.medicalert.org). The membership fee ($35 the first year and $20 a year thereafter) entitles you to several services, including indentifying you and your medical needs/conditions to emergency responders should you be discovered unconscious. It can also tell ER personnel which family member or friend to notify if you are in trouble.

7) Check with your city or township. They may have another program in place for just this situation.

8) Hire a Wake-up Service. Alarm clocks don’t work for some people and there are plenty of firms that are set up to be a substitute. Have them call you twice a day with instructions on what to do if you do not answer. Of course, don’t forget to inform them if you simply go out for the evening, or when you attend the Oley Conference.

9) If you work, ask a coworker to be alert for days when you don’t show up. Have them place a call to your home to check on you.

10) If you live with one or more other persons, don’t assume you are immune from this situation. Have a plan in place should your family or roommates leave town for a few days. Your arrangements don’t have to be continual, but someone should be available to perform this service occasionally. Then be certain to put them in force when you need them.

These suggestions are but a start. If you are doing something that hasn’t been covered here or have a story that might interest the rest of us, please contact the LifelineLetter editor Lisa Metzger at metzgel@mail.amc.edu. I’m going to miss Bob, but if his tragedy helps to save someone else then his loss will have some meaning.

Unfortunately, this is not the first time such an event has happened to a member of the Oley family, and it can be very painful for the survivors. So please, if you won’t take these steps for yourself, take them for the sake of your family, friends and Oley.

This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

Updated in 2015 with a generous grant from Shire, Inc.

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.